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CJ
14th-January-2004, 11:34 AM
Not like me, I know, but bear with me.

I am writing in my capacity as an employee of The PBC Foundation. PBC stands for "Primary Biliary Cirrhosis," which is a liver disease that is not related to alcohol or drugs in any way. It is a disease that currently has no known cause or cure.

Part of my remit within the Foundation is to raise awareness of this long term debilitating illness. Hence, I am writing to you. My aim is that if you know about PBC, then you may be able to pass on information should the need ever arise.

PBC is an auto-immune illness which is linked to Diabetes, Lupus, Thyroid, Rheumatoid Arthiritis, etc. With PBC, the body sees the liver as a foreign object and attacks it. There are medications available to ease symptoms, and to slow the progress of the illness.

90% of people with PBC are women. PBC is the biggest single cause of liver transplant in this country. Over 1 in 1000 women over 45 are thought to have PBC.

PBC is still not commonly known about and it is our aim to inform the general public as well as the medical professions to the latest news, research, etc.

If this rant enables you to help someone else down the line, then good. If it even just gets you to think about organ donation, then all the better, too.

Please don't be alarmed: those of you who know me on this forum will be fully aware that normal service will be resumed!!:wink:

take care...

CJ.
www.pbcfoundation.org.uk (http://www.pbcfoundation.org.uk)

fruitcake
14th-January-2004, 02:47 PM
Originally posted by Ceroc Jock
PBC is the biggest single cause of liver transplant in this country. Over 1 in 1000 women over 45 are thought to have PBC.
Well CJ,Very interesting text, as a Dialysis Nurse, I like to raise awareness also of organ donation 'opportunities'(ie, mainly once one has died!)

Dont know what other forumites think about this.
Fruitcake:nice:

Stuart M
14th-January-2004, 03:27 PM
Keep up the good work CJ. :nice:

Personally, as a transplant recipient (OK, cornea, but I still needed someone to donate one!), I'm passionately in favour of moving to donor exemption cards. That is, you have to carry a card to say you don't want to donate, instead of the other way round.

I also find it bizarre that doctors still have to ask the permission of relatives. When you consider it, when a person dies, every part of their estate immediately becomes subject to legal procedure concerning wills etc. - except the body itself! This is then subject to the desires of relatives who (let's face it) are not really in the position to make a rational judgement at the time.

I appreciate that getting rid of relatives' "rights" here would effectively make a donor card a "body will" - but surely it's better to respect the wishes of the deceased than those of the random selection of relatives who happen to be around at time of death?
[/soapbox]
(Sorry if I'm hijacking your thread CJ!)

Aleks
14th-January-2004, 03:46 PM
Originally posted by Stuart M
Keep up the good work CJ. :nice:

Personally, as a transplant recipient (OK, cornea, but I still needed someone to donate one!), I'm passionately in favour of moving to donor exemption cards. That is, you have to carry a card to say you don't want to donate, instead of the other way round.

I also find it bizarre that doctors still have to ask the permission of relatives. When you consider it, when a person dies, every part of their estate immediately becomes subject to legal procedure concerning wills etc. - except the body itself! This is then subject to the desires of relatives who (let's face it) are not really in the position to make a rational judgement at the time.

I appreciate that getting rid of relatives' "rights" here would effectively make a donor card a "body will" - but surely it's better to respect the wishes of the deceased than those of the random selection of relatives who happen to be around at time of death?
[/soapbox]
(Sorry if I'm hijacking your thread CJ!)

My personal wishes/beliefs for what I desire when no longer in this lump of lard differ greatly from those of just about all of my relatives (and friends). I have therefore organised a written list of my wishes and the possibilities open for transplants/donation to medical science etc which just about everyone has seen and/or has access to a copy of. I'm not sure how this stands legally and I suppose any legal wrangling that could take place would take so long as to render my wishes impractical.....

I have, however, made it very clear that if they don't conform to my wishes I'll come back and haunt them in a manner most horrible.

Dreadful Scathe
14th-January-2004, 04:17 PM
Originally posted by Aleks
I have, however, made it very clear that if they don't conform to my wishes I'll come back and haunt them in a manner most horrible.

:D

I agree with Stuart, you should have to carry a card saying you DONT want your bits used after they are of no physical use to you anymore. As for relatives saying what happens to your remains: you may not even like them - they may be the type to sell your remains to the highest bidder :D

Twinkle Toes
14th-January-2004, 07:37 PM
[QUOTE]Originally posted by Ceroc Jock
Please don't be alarmed: those of you who know me on this forum will be fully aware that normal service will be resumed!!:wink:


Yes CJ, we know that underneath that rough, non-challant exterior, is just a big, softie !

Have heard of this before - keep up the good work CJ.

TT x :hug:

bobgadjet
15th-January-2004, 01:08 AM
Originally posted by Stuart M
I'm passionately in favour of moving to donor exemption cards.


I suppose you could have a little tattoo somewhere that says YES or NO to having bits used to keep somebody else alive.

Alfie
15th-January-2004, 01:11 AM
Well done C.J.
This was somthing I had not heard of before keep up the good work.
On the subject of organ donations if any of you lovely people should be around and I suddenly die, any body can have any bits of me they would like.
My Dad passed away just over a year ago and donated all sorts of stuff. The only real shame was he died on a sunday and they couldn't find a surgeon to work on his eyes within the time limit. He was 73 and had fabulous eye sight.
I'm just happy to think that poorly people benifitted from the death of a man who had led a great life and that some of him still goes on.

fruitcake
15th-January-2004, 09:53 AM
Although the thread was based on more than just organ donation, I would like to point out that hardly any kidney transplants were done last year for our Aberdeen dialysis patients, we did have a couple that were from live donations though (family), but the transplant waiting list just keeps on growing..........:really:
fruitcake

Tiggerbabe
15th-January-2004, 10:11 AM
Good one CJ :kiss:

and I agree OPT OUT donor cards would be a much better idea but I've got my OPT IN card in my purse for now.

Having only recently lost my mother I'm very aware how upsetting death can be for those left behind, but if organ donations can offer a better life (or a life at all for that matter) for others we should take great comfort from that :hug:

bobgadjet
15th-January-2004, 02:12 PM
Originally posted by Sheena
but if organ donations can offer a better life (or a life at all for that matter) for others we should take great comfort from that :hug:

How true, but unfortunately not all religeons will allow it. some religeons say the body has to be buried "whole". What a pity, and a waste.

I lost my Dad on 20th Dec'03 and he had only recently had a pacemaker fitted. I asked if it could then be removed for somebody who may be able to use it, but alas I was told NO.

My personal feeling is that burial is such a waste of so many things. I realise that for some it can mean certain things, but not being a believer, it means nothing to me.

I would much rather be used (if there is anything worth saving), but who knows, if I had a card, or something similar, that who needs to know, would actually get to know, before it's too late (like the eye donor).

That's why I mentioned a small tattoo. It cannot be lost, stolen, or defaced without MY knowledge, and ALL would know what I want done, without exception.

Just my opinion, for what it's worth.

fruitcake
15th-January-2004, 08:24 PM
Originally posted by bobgadjet

That's why I mentioned a small tattoo. It cannot be lost, stolen, or defaced without MY knowledge, and ALL would know what I want done, without exception.

Just my opinion, for what it's worth.

I agree with ya totally.
As having to inform people their relatives have died, I find myself with a wobbling lip, trying not to cry(its awful) I can see how difficult it is to ask for possible organ donation, especially with children, but a tattoo would be easier to bring up. Of course we have people trained to do this now.
I personally have shown MY tattoo to all and sundry, it is a conversation piece ( its on my backside and is a chinese symbol!)
So at least everyone would know what your wishes are, especially if you were to show it off at funerals, weddings etc, but my favourite is the opt out card, which is what they do in a lot of countries, whereby organs are removed unless the 'owner' specificlly did not want them to be removed after their death.

:nice: Fruitcake

Tazmanian Devil
15th-January-2004, 08:52 PM
What an interesting thread!!



Originally posted by fruitcake
I agree with ya totally.
As having to inform people their relatives have died, I find myself with a wobbling lip, trying not to cry(its awful) I can see how difficult it is to ask for possible organ donation, especially with children, but a tattoo would be easier to bring up. Of course we have people trained to do this now.


I agree fruitcake I also work in the health game im at the beginning of a log hall of studying to become a nurse. Unfortunatly I see alot of death working with older people with Dementia, and it's not nice at all talking to the relatives about a lost loved one, especially as you tend to get attached to the clients yourself. So what it is im trying to say is I agree that to have a tatto of some type to say either yes or no to donation of organs would creates less heart ache for the people who are left behind, and the wishes of the decesed would be granted. Gotta be a winner all round :nice:

fruitcake
16th-January-2004, 02:14 AM
Originally posted by Tazmanian Devil
What an interesting thread!!

I agree fruitcake I also work in the health game im at the beginning of a log hall of studying to become a nurse.
Good luck!I have been nursing for 20yrs, and death gets easier,but dealing with the relatives doesnt.

Its intersting that CJ has started this thread 'cos most people I know don't have an organ donation card OR have discussed it with their family.

Praps the governtment should put out nice adverts- at the end of the drink-driving ones perhaps!

:devil:

CJ
16th-January-2004, 02:39 PM
It is my understanding the "new" picture driving licences have a section where you tick to become a donor, on the form, then it's there on your licence for good.

Anyone know how to spell license?:rolleyes:

I have a formulated letter to send to MP's. PM me, if interested, with your email addy...:wink:

bobgadjet
16th-January-2004, 02:45 PM
Originally posted by Ceroc Jock
It is my understanding the "new" picture driving licences have a section where you tick to become a donor, on the form, then it's there on your licence for good.


And if you haven't got your "new" picture DL on you when you die/are killed ?
And what if you aren't a driver ?
And if you have an old DL ?

Know any reputable tattooists ?

CJ
16th-January-2004, 03:01 PM
Originally posted by bobgadjet
reputable tattooists ?

As oxymorons go, is that not up there with female logic and military intelligence?!?:D

Back to seriousness, didn't offer it as answer to ALL questions, but a move in right direction. If one was inclined to donate, then one would get the new license, and carry it at all times. (might look iffy in Tramp's speedo's tho!!)

CJ
29th-January-2004, 05:04 PM
... the "opt out organ donorship campaign"

here is an email address:

organoptoutcampaign@msn.com

He is in touch with Evan Harris (Lib Dem) MP, who is leading a private member bill or something like...

Anyway, he has formulated a letter to send to your MP to generate support on this issue.

Good luck to anyone who wants to take this forward...

demonic_chick
2nd-February-2008, 09:24 PM
[/b]
Well CJ,Very interesting text, as a Dialysis Nurse, I like to raise awareness also of organ donation 'opportunities'(ie, mainly once one has died!)

Dont know what other forumites think about this.
Fruitcake:nice:


Hiya
Just the person, as i need help.

Do you know of any forums that are available for live organ donation people.
This is not something that i would normally share on this site, but i am in the middle of tests for donating a kidney. Although i am calm about this at the moment, i am only talking to doctors and psycologists. What i would really love to do is talk to real people who are or who have already done this.

Do you know of anything??? Any help would be great.

Thanks
x

Barry Shnikov
3rd-February-2008, 11:55 AM
Hiya
Just the person, as i need help.

Do you know of any forums that are available for live organ donation people.
This is not something that i would normally share on this site, but i am in the middle of tests for donating a kidney. Although i am calm about this at the moment, i am only talking to doctors and psycologists. What i would really love to do is talk to real people who are or who have already done this.

Do you know of anything??? Any help would be great.

Thanks
x


:worthy::flower:

Wow, kudos to you. I wish you and all involved all the best. I'm sure all on the forum would help in any way they can. I personally don't know of such a forum or of any such person, but I bet someone here does.